About proudblacksista

An Aboriginal woman. mother of 4 diagnosed with an inoperable brain tumour 7 years ago.I want to share my story to help others. I am working to help other Aboriginal people face the battles of Cancer. Email me with your stories or concerns at aboriginalcancer.com

I have been having some problems, actually when do I not have some problems? The pressure is building up behind my eye, and I must have surgery next week to relieve the pressure.

It’s been slowly building up, I have felt it, apart from the usual pain, my eye has been hurting. It gets itchy and sore, it’s irritated and its blurry and sometimes I just can’t see at all out of my eye. On the positive side, I have had this before and it only affects one eye at a time. I would really hate to have both eyes affected at the same time.

So what happens is the blood and fluid seem to rush around the one eye, the small capillaries can burst and I get really bad blood-shot eye or hemorrhage in the eye that is affected. I weep blood like some sacred statue, but I can’t perform a miracle healing on myself. I have a patch to wear so that my eye is not affected by light and under that I wear a band-aid for the weeping, if I didn’t someone would start praying at my feet and that would just go to my heat and God would strike me with a lightening bolt.

Again, I point out that I am lucky, the first time I had this, I didn’t know what it was, and had a nasty incident with a racist paramedic. This time I knew something was wrong and had time to see a doctor and to get it all organised to have surgery next week. While it’s been annoying and frustrating, I can’t go anywhere, I can’t read or watch TV for long before the soreness & fuzzy of the good eye is way too much to deal with. God Damn it, this has had an impact on my tweeting!!

My vision in the gammy eye will improve after the surgery, you don’t realise when it slowly bit by bit affects the eye sight, it’s not until one day you realise that things in the distance look like a Jackson Pollock painting. It’s rather funny that now at this point, with the eye shut the swirling around in black or blurred white is definitely a Jackson Pollock piece.

I’m a 59 year old woman and because I had a hard time with my cancer I am unable to work or do many things that I used to be able to do. I don’t have breast cancer anymore but still need help. I had been signed up for a care coordination services at my doctor, a woman came and talked to me and my doctor and told me all the benefits like someone to take me to my hospital appointments, assistance in finding specialists and access to services like optometry, podiatry and pain management. Two weeks later I had an appointment at the hospital and I asked my doctor to arrange for the people to take me to the appointment, there was some confusion as the doctor thought I had to do that, I thought the surgery did it as I had no contact details. Turned out that the doctor hadn’t been given a card or anything as to who to contact. The receptionist found the paper work and it had a contact number and the name of the woman. The call was made and the people in the team wanted to speak to me, so I took the phone, I explained who I was and that ….. had come to my doctors surgery and signed me up to this program and that I needed help to get to an appointment in town at the hospital. They took my name and number and said they would call back.

A couple of days later and I hadn’t heard from that mob so I called them. I told this other woman the background and she listened and asked me what date and time was my appointment, she said that she would check the diary and see if anyone is available but that priority goes to clients of ….. and …. ( Aboriginal Medical Services). I asked why they came to my doctor if they aren’t going to help me? A couple more days and I still didn’t know if I had transport to the hospital or not and I called them again. I spoke to a different person and told them how I was signed up and I need help with an appointment coming up soon and I didn’t know if they were going to take me or not, this one told me that someone would be able to take me to my appointment, that it was in the diary and took my address. I was relieved that I had a way to get to the hospital and thought that was that.

On the day of my appointment a lady came and identified herself as ….. from….., and asked if we could sit down and have a chat before going to the appointment. She told me about the local community transport and gave me a flyer for them asking me if I had used them and recommended that give them a try when I needed transport. I asked … to explain to me the care coordination, she gave me a pamphlet and told me it was part of the closing the gap and it was for Indigenous clients who have major chronic illness and she told me what the other lady said at the doctors surgery. So I asked her if it offers me this, can she help me get glasses and I need to see someone about my feet and I need access to the pain management clinic. She told me that if I went to the AMS I could get those services there. I told her I was happy with my doctor and can she help me find the services I need and help with the transport. She told me priority was given to AMS clients and that it would be better for me to change doctors as it would make things easier for me.

I explained I like my doctor and I’m not changing to the AMS as too many gossips and everybody wants to know your business and they got no shame with wanting to dorry. I asked her about the pain management clinic and said I really need it, she told me to ring around to some places and to get back to her. She told me to go to one of the optometrist places in the local shopping centre and that medicare gives everyone a free eye test and that all the shops have a range of glasses that are free for medicare. She told me to ask my doctor if he could recommend a podiatrist and that if I tell them I’m on a CCSS package and to ask them to bulk bill me. I asked her what she is supposed to do, she said she helps with transport and organises appointments and helps with all the services. She told me to change my doctor and at the AMS things would be easier for me and it would be in my own best interest to sign on.

I don’t like being told what I should do, if a service is there funded by the government to help me, this mob should be doing that, not telling me to change doctors to make their work easier. If they have free glasses and shoes and medical aids at the AMS under this package, then they should have them for the clients who don’t go to the AMS. That is discriminatory to treat people like that. You shouldn’t be able to do that, it’s government money to help people like me, so they should be using it and doing their job, not expecting private patients to do it for them. Why do they go around to doctors surgery signing on people that they have no intention of helping.

I’m asking everyone to do this online survey if you have or live with a family member who has a noncommunicable disease. It doesn’t matter what country you are in or from. I really urge Indigenous mob to do it, we need to get our information out there

HAVE YOUR SAY: ONLINE CONSULTATION OF PEOPLE LIVING WITH NCDS

This online survey aims to better understand the daily impact of noncommunicable diseases on people’s lives and their recommendations for decision makers.

Your responses will be collected along with those of other people all over the world to help create an Advocacy Agenda of People Living with Noncommunicable Diseases. This Agenda will be presented to decision makers from across the world so that noncommunicable diseases (NCDs) become a priority everywhere.

The main NCDs comprise cancer, cardiovascular disease, chronic respiratory diseases, and diabetes, as well as a range of other diseases and conditions, including mental health disorders, neurological disorders, autoimmune disorders such as psoriasis, bone and joint conditions such as osteoporosis and arthritis, renal, oral, eye and ear diseases, and injuries and disabilities. Many NCDs are linked by four shared major risk factors – tobacco use, unhealthy diet, physical inactivity, and harmful use of alcohol.

A woman from a government department has just been in my house and she was telling me that she is going to a party on the week end a part with a theme, the theme is Australian music award winners. If you are wondering why I know this, why did she share this with me? I wondered this too, who cares what she is doing.

She told me she loves Jessica Mauboy and was going as her. The conversation then took a very nasty turn. This white woman told me that she was going to use a really dark fake tan and not do the black face. Did she want me to congratulate her on being a decent human being. Yes then I realised, hang on you’re not going to black face but have a really dark fake tan. I expressed my opinion that doing this was half a step from black face.

Ignoring my warning she then told me she was going to also wear lipstick, her words were” I’m going to wear lipstick, really bright red lipstick you know lubra lips red lipstick”. Yes these words were spoken in my house.

I don’t know how I kept my cool, but I informed her that both were racist and that using ‘lubra lips’ is incredibly offensive and I’m amazed she can sit in my house using such brazen racist terms. She explained that she grew up with Aboriginals in Western Queensland and that she was of a Muslim Heritage family. I told her I didn’t care what her background was and that she would be knocked on her arse if she said lubra lips to any Aboriginal woman. I asked her to leave and I went down to her office and made a complaint about her.

I went to the office and I waited and waited until I could see her manager, a woman who assured me that Marissa (yes that was her name) wasn’t really racist and she grew up around Aboriginal people in Western Queensland and she wouldn’t have meant any offence, could I have been overreacting?

Well folks I don’t think I’m overreacting I think I’m under reacting if anything. I had to give a history lesson to the manager, just like I did to Marissa. This is just a sign of how racism against Aboriginal people is down played. Incidents like this encounter are under reported and denied by people or just seen as an over reaction.

I’m just totally disgusted that someone, anyone could still use language like lubra lips and believe that it’s okay or to think that fake tanning is better than full on blackface.

I’m going to organise a formal complaint to the regional manager of that department and if need be I’m going to the minister, this shit has got to stop.

Thought I would take the time to give an update on what is happening with me. I have regular hospital visits but I’m still here posting and sharing your stories.

I first started blogging to tell my experiences and to share the tips I had picked up on the way. I had hoped it would help others, because I was amazed at the lack of help for Indigenous people. Then you the reader and others started sharing your experiences and had the same story, no one was there to help, I thought this deserves more than an approval tick in the comments, I started to get in-boxed on Facebook with stories and questions. The most logical thing to do was to honour your stories and post them, I only take out the names of people and places, not just to protect the innocent/guilty but to protect myself from any backlash. I think even taking out those details the stories are powerful and show their is a gap that our people are falling through. This gap is part of the reason why so many of us die from cancer when we shouldn’t be.

Being able to share your story of loneliness is important too, to show that you are not alone, we know as Indigenous people that cancer is a shame thing in the community. That shame stems from the great numbers of our people who die from cancer, who go to hospital and never return. Our community doesn’t have the education out there explaining the complexities of cancer and its treatments, so we fear it. That is one thing that I have been trying to change, that fear that not talking that loss of hope with cancer.

My mother died from cancer and she was misdiagnosed for years, she was told she needed a hip replacement, but in fact she had cancer and needed that treated, when she fell and broke her hip, they found the cancer and she passed away not long after that. I don’t want that to happen to any more of our people. I want us to be able to get the help we need. I want us to survive cancer.

I get calls from people many that I don’t even know, who are given my phone number by someone else, I go and visit people, take them to treatment, sit with them through treatment, go to medical appointments with them. I also try to get these people to help others that are going through the same thing. I don’t get paid to do this, I do this because some one has to do it. Okay I have to admit that I don’t do it so much now, as my health has been a bit iffy for the past 6 months, but I try to help the person get assistance in the travel or what ever. I can’t always talk on the phone, because I get head aches or my jaw starts hurting, so I have long rambling email or text conversations.

So, I’m still here if you want to share your story or experiences with me the email is aboriginalcancer@gmail.com I’m always willing to help if you need someone to talk with, need some help in finding assistance or how to navigate the medical system. You can also find me on Twitter. I’m the one quite often having a rant about the lack of services for Indigenous people with cancer. I’m Proudblacksista

Join me in the Facebook group Aboriginal Cancer Connections, this is a closed group and its a nice space to feel safe and ask questions and get a variety of answers from different Indigenous people around the country. We also ask that no one come into our group to use it for research or study purposes, this is space for us as Aboriginal and Torres Strait Islander people to share our journey and help each other. The group is open to Aboriginal and Torres Strait Islander people who are or have been affected by cancer, we also welcome non Indigenous partners or parents into our space.

The reason I started the group was that I shared information with a another Aboriginal woman on Facebook a mutual friend connected us, as she was in the same position as me. She found no help for herself and a system doesn’t bother with Indigenous people, all the services out there ignore us. So we helped each other via Facebook in different states and we also helped others around us. So the next step was to have a page for all of us to share our journey and share our advice. So if you are Indigenous please come and join us.

What drives someone to crowdfund? What makes a person effectively go out and beg to strangers to meet some goal? At this time, let me own up that I have a crowdfunding account and I am seeking help. I didn’t take this step lightly, I thought long and hard, weighed up the pros and the cons. I found having to ask for money to help me with a medical issue extremely embarrassing. It’s a big shame job, that I need help and have for a while, because my medical expenses are so big. It’s hard to admit that and it’s hard to always be struggling to pay everyday bills and then the never ending medical bills.

If I found it hard, how do other people feel about it? I feel sad when I see people raising funds for life saving surgery, or ongoing medical costs or emergency surgery. I feel so sad that people need to do that, that someone’s health and wellbeing is dependent on a bank balance. Just have a look at any social media platform and you see the call for help. What kind of a world do we live in where your life is measured by your bank balance, where medication is out of reach for many, and paying for a specialist is out of the question?

I have seen Aboriginal Communities calling for help to rebuild items after floods or fires, there are football clubs seeking help, because they are in a poor area and want as many kids playing as possible. I see calls for money to help ol’ mate get to an ANZAC day parade or Remembrance Day reunion to see his mates before they all die. I see all these and others. These I understand, you want to rebuild your Community but need help, I want to watch kids play sports and if by crowdfunding a club can reduce the fees to families, I think that’s great. I also like the idea of helping a person be it an old digger or the lady who has worked tirelessly for her community to be able to get to see their old friends or see a musical in a city they have never been too. I believe in paying back into your community to help.

I must admit I get cranky when I see crowdfunding calls to help a couple have their dream wedding or honeymoon. Really? Maybe set your dreams to match your budget don’t ask me to pay for a 70-thousand-dollar wedding, or your honeymoon to Hawaii. Same goes for the call to buy a bike, if you are not trying to enter a sport on a serious level, don’t get me to pay for a thousand-dollar deadly treadley just so you can look better than your friends. Come to think of it, don’t clog up my time line with your appeal so you can upgrade your iPhone, or an Xbox. Why should I pay for your frivolities? I give when I can to the medical needs and to support others. I help at my local church and in the community doing clothing or blanket drives and giving to food banks. I believe in paying back and helping others, if I don’t have the money I help in other ways.

You may think that’s a bit rich considering I am using crowdfunding to help pay for surgery that is out of my reach financially and because terminal people don’t really get to go up the waiting lists. But, I will give to a needy community, the school that must replace vandalised items, the local sports club, trying to make the financial burden easier on parents so the kids get to play and the person struggling to stay alive and live a relatively healthy life. If you are a sick kid wanting the Xbox because you can’t go out and play that I understand, same as the person who wants to see their favourite band before they die, these I will help, they are not the self-centred pages that I’m talking about.

I think the world had gone awry if a person wanting a PlayStation gets more money and more concern than a person who needs to help to pay for a new kidney. Where are our priorities? When did we become a place, where sick people need to plead for money to pay for medical expenses and yet someone can get more money to pay for a holiday? I have seen on my own timelines on social media a family crowdfunding for their child to go to a national competition, asking for airfares and accommodation for all the family, yet one child is competing, scroll down the page a bit more and I see them proudly posing next to the hole in the ground that will be their swimming pool and photos of the two new cars. How do you justify crowdfunding when you are not cutting back on your own expenses? How can you expect people to give when you are not cutting corners or saving?

Timelines are full of kids crowdfunding to get bikes or play stations or go to Schoolies. What happened to saving up for something? Am I that old and cranky that I think this is a bit rich?

Again, maybe it’s me, but I had thought with the inception of crowdfunding that we had a great way of helping genuine needs be met. Like I said earlier, I give to a medical fund, I do this because I know how it feels to have life kick you in the face and you must seek help. I have spoken to some people who have crowdfunded previously and say it seems to be harder now, as there is so much competition for your money. Unfortunately for those in dire need they have trouble competing with the cutsie couple or the crying kid who wants that bike.

Each year NAIDOC comes around and we as Aboriginal and Torres Strait Islander people celebrate our culture our survival and remember those who have fought for us to get the rights we have now. Please don’t forget the laws of this country kept us out of society for years, we were not counted on the census, we were ruled by the government who set protectors and missionaries over us, the local police Sargent has more say in our lives than we did. We had to get permission to move, to buy things to even get married. We had to fight to keep our children with us. The department sent someone around to your house to check if it was clean. We had no rights. We have fought for everything we have. We are still fighting for equality. Sure Stan Grant can talk about the Aboriginal Millionaires and the black middle class but even there we are seeing the great divide between those going up and those who are still battling to make ends meet.

We want to share our pride in our Culture and share our pride in our people and in how our people are doing so well. But NAIDOC can be tokenistic when it’s the only time of the year that most media show an interest in us. Sure the media always have stories highlighting the bad or the sad, NAIDOC they show the good. The ABC is full of promotions of how they support NAIDOC week, you will hear Aboriginal and Torres Strait Islander music and people. But why can’t they do that for the rest of the year? It’s not just the ABC many other radio stations will play Archie Roach, Yothu Yindi, Christine Anu and Jessica Mauboy and speak of how they support “their Indigenous Artitists”.

Some big business and Government Departments have Aboriginal and Torres Strait Islander shirts that staff wear for the week, again where is the concern and regard for the rest of the year? Sometimes it’s management that get the shirts, while the poor little black worker doesn’t. They will have a NAIDOC morning tea, usually organised by the Indigenous Staff, because it must be too hard for the non Indigenous staff to organise it. Schools will hold activities but depending on the school not everyone participates. Some schools have the morning tea and only invite the Indigenous students and their family, while some will hold events for the entire school, I like that, I want the entire school involved.

One school this year is banning NAIDOC as a racist activity.

I love going to Musgrave Park on the Friday of NAIDOC, catching up with family and friends, but over the years it’s become bigger, it’snot just about the culture. I must admit I get annoyed kids who have to grab everybag and throw away all the information and just keep the goodies in it. I think read the stuff first. But on this note I must admit I have a real dislike for the white people who go, the allies who take lots of photos put there kids on the rides buy show bags, but don’t sit down with our Elders or others to learn and jut to talk. Come on if you are going to NAIDOC and you don’t have a conversation with an Indigenous person you might as well not come. While I’m on a roll of what I don’t like allies who come and ‘stock up’ on rulers, pens and pencils and all the other stuff. NAIDOC is not the time for you to save yourself a few bucks at our expense, do you not see that as another way of stealing from us, using us.